Saturday, August 22, 2015

Tuesday, July 28, 2015

I've been having more and more dreams that include Brianna. Amazing. I also have a fair amount of dreams that include my dad. Either or both can be in them and it's 'normal'. I love it. What a wonderful feeling to have two people that I have loved with my whole heart visit with me in my dreams. I feel so blessed.

Sunday, April 12, 2015

I am one of those people who dream every night, crazy, vivid "real" dreams and remember them the next day. I have tried countless times to try and dream about Brianna to no avail. I would lay in bed before sleep and try to convince myself that tonight I am going to see Brianna in my dreams, wanting so desperately one more hug, one more smile, one more of whatever I could get....but it never happened until

last night

I dreamt I was out with two of my sisters, going to meet our mother, and guess who was in my mother's arms....

Brianna. I took and hugged and hugged her sweet little self.

Then the dream simply dissolved.

How sweet for Brianna to visit me on her 8th birthday, today and give me that hug I have wanted for so long. Kisses to you baby girl.

Thursday, September 4, 2014

Today, September 3, 2014 marks five years since Brianna died. Five years. Have been looking at this date on my calendar for the last month and reminiscing. Happy, sad, amazing times we had. Couldn't decide if I should take the day off (and do what? be a crybaby?) or let things happen as they happen. Which is what I did and the last couple of days have been interesting. Being that I work as a nurse taking care of medically fragile infants, I have many different little patients that I see during the month. Last night my schedule had me at the home of a Trisomy 18 girl (yeah, go figure). Warmed my heart from the moment I walked into her room. I have taken care of her before and she remembered me. Hugged me repeatedly...very sweet. And then today I was scheduled to work with a child that is so very special to me. I have been taking care of this very special child for over a year now and I want to share a little bit about her with you.

This little girl was the third patient I started to care for after getting my nursing license. When the Director of Nursing in the office asked me to go see this new patient I said sure, why not, and then she handed me the child's file. First thing I noticed is that her name was Brianna...hard one...then I read that she had a chromosome disorder...oh no...and a heart condition....it can't be. My head was spinning but THIS IS NOT ABOUT ME. It's about them and so off I went.

Walking into the child's room and seeing her lying there so petite in the bed had me talking to myself...no tears Brenda....don't cry...this is not about you. It has been a very harrowing year for this little girl named Brianna, but she has rounded the corner and is doing amazingly well. Right now she is the age my Brianna was when she died. And when I picked her up to place her in her bed tonight, I sneaked an extra hug from her, feeling that perhaps my Brianna was sending that extra hug to me through her. Be assured I know she is not my daughter, nor did she take my Brianna's place, but what she did do is a lot of healing to my heart.

Wednesday, August 14, 2013

August 12, 2013 is a date that will forever be engraved on my heart. It is the day that I began my second nursing job with Caring Hearts taking care of medically fragile children in their homes. My heart is so happy. I have accomplished my goal...what an amazing feeling.

Sunday, July 14, 2013

Graduated July 3, 2013 with my Practical Nursing license....and Bri was sitting right there on my shoulder the entire time. Not totally out of the woods yet, sit for the State Boards on July 26th in Mobile, Al. To my total shock and surprise was offered my first job two days after graduation during my first interview. I was like, "are you offering me a job" and the lady said "yes" with a smile on her face. I was speechless. Expected to go home, wait around all nervous for several days for the "call" and BAM! didn't happen that way. Of course I will be working nights (which I expected) but it's all good because classes start again in August at the college, for which I am already enrolled to continue my nursing career. God has been so good. What a truly humbling experience I have encountered during the last 6 years.

I know a future in pediatric special needs is in my future as well (my heart). I was also offered a position PRN (as needed) doing home health for medically fragile children. My experience in taking care of Brianna landed me that....

Tuesday, April 2, 2013

Here it is April, again. Bri's birthday (would be her 6th) is on the 12th of this month, a Friday. My thoughts at this moment is to spend the afternoon in quiet reflection and tremendous gratitude for the blessings her little life bestowed on many.

About a month ago during an intensive study of the pulmonary system, how Bri's life ended came crashing down on me. The instructor was going into what happens to the heart and lungs and the body during this time of distress (and the weeks leading up to it) that leads to death. All I could think about is how she was so right, the book was so right...that everything it said would happen, did happen.....to Bri. Oh, the heartbreak. I had to leave the room.

Days passed and life goes on...

One thing I can say is that the nursing education has been beneficial in my healing process. I hope that in the future the knowledge I have gained can help someone else through a difficult time in their life.

Monday, March 12, 2012

It's been like forever (or so it seems) that I posted...so much has happened. The past months have been bittersweet. Bri has now been "away" longer than she lived. Hard to believe. Her life with us seemed like such a long time....such a wonderful blessed time.....

fast forward.....

I'm sad to say that our marriage didn't survive the tragedy that found us. God knows we tried...and tried...

Something good has come of all of this though, I have become someone I never thought I could be..last Fall I took a job at a Skilled Nursing Facility that houses mostly elderly folks...and I love it. My position is in the rehabilitation department (I often wonder just WHO is getting rehabilitated...me or them?!!) I started college last Fall as well working on my prerequisites for nursing. God has been amazing in answering prayers...I have been accepted into the nursing program beginning in May of this year. (Working full time AND going to college full time has paid off!!!). My plan is to eventually work as a hospice nurse. Never in a million years would I have thought that being a hospice nurse would be my goal...people say to me "how could you do that?" and my reply to them is "when your child dies in your arms, what could possibly be worse?" Working with the elderly has been immensely rewarding. My thoughts are if I can make one person feel not so alone, and loved, then I have been incredible successful. Life is good, it has been incredibly hard, but good. Much love to all who have followed Bri's life. She was an amazing soul who inspired me to be the person that I am now.

Wednesday, August 31, 2011

I go through the day with a weak smile on my face. Sweet baby boy Caleb has been touched by the realities of Trisomy 18 and died. Such a harsh word...but I learned that it is one of those words that holds reality, true life, finality. Caleb was here 29 amazing months, so was Brianna. Caleb's death was caused by pulmonary hypertention, so was Brianna's....Caleb gave hope to so many people with babies born with Trisomy 18....so did Brianna.

The pain never goes away, it just softens a little bit with time. God was so good to have shared Caleb, Jeannette, Steven and Caleb's family with all of us, may he continue to bless them during this very difficult time.

Wednesday, August 24, 2011

I can see the date on my calendar and my heart breaks. Sept. 3rd will be two years since I kissed your sweet face. It feels like you have been gone for longer than that. Oh how I miss your morning snuggles. Love and miss you so very much baby girl. Forever in my heart.

Tuesday, April 12, 2011

Today you turn 4 years old....and I can only imagine the birthday party you are having in heaven. How difficult this path of grief is to follow. Right now your daddy is in the Dominican Republic on his second (men's) mission trip. Your sister is in Fort Worth, Texas living with her brother, wife and little girl, who is 15 months old, and helping her heal her broken heart. My plans are to go on a mission trip later this summer to visit several orphanages. The message sent to us through you from Christ continues to change our lives for the better. Oh how we miss your silly, happy smile and morning snuggly hugs.

Here are some pics from Bri's short life here with us. Many of them make me smile with such happiness. As I have said at least a hundred times, she was the happiest child I have ever known.

Me and my Daddy in Chicago

My Favorite Chair

Bri's visit with Annabel

Halloween....Chicken Little

Reading with my Sissy

Bri Loved being outside in her swing.

Getting Lots of Love..It was Her 2nd Birthday With Us

Ashley babysitting (!!) in Chicago...Isn't it the cutest!

Chillin' With My Dad

Bri was always a determined little girl...out to prove that T-18 babies CAN learn and deserve a chance just like every other child on this earth.

"Death leaves a heartache that no one can heal.Loves leaves a memory that no one can steal."

Tuesday, November 30, 2010

Oh how the holidays wreck havoc on one's soul. At Thanksgiving, I gave thanks to God for our family, both here and in heaven (or heaven forbid.....elsewhere), thanks for Ashley getting a job at Disney, thanks for my husband, he is such a good man, thanks for having had our little Bri for 28 months, thanks for our entire family, the list goes on and on. Yet, there's still that place in my heart that is empty. I know Bri will be celebrating the upcoming Season of Advent with the Best and I just have to keep the vision of that in my head and heart.

Monday, November 1, 2010

What a sweet little girl and she reminds me so much of what Bri looked like at that age. The paragraph below is a post made by Lilly's mother that I want to share. I applaud Rick Santorum for his wonderful writing ability.

Today I read an article by former Pennsylvania Senator Rick Santorum, who's youngest daughter, Bella, has trisomy 18. The article, written May of this year, was celebrating Bella turning 2. (Yay!) As I read the article, I identified with so much of what Mr. Santorum said. It seems like so many of us that give birth to a trisomy 18 baby have the same sorrows, battles, and incredible joy. You can read the article below.

The Elephant in the Room: Two years worth every tear

The columnist's daughter has lived despite every dire prediction.

By Rick Santorum'Incompatible with life." The doctor's words kept echoing in my head as I held my sobbing wife, Karen, just four days after the birth of our eighth child, Isabella Maria.

Bella was born with three No. 18 chromosomes, rather than the normal two. The statistics were heartbreaking: About 90 percent of children with the disorder, known as trisomy 18, die before or during birth, and 90 percent of those who survive die within the first year.

Bella was baptized that day, and then we spent every waking hour at her bedside, giving her a lifetime's worth of love and care. However, not only did she not die; she came home in just 10 days.

She was sent home on hospice care, strange as that sounded for a newborn. The hospice doctor visited us the next day and described in graphic detail how Bella would die. In sum, she could die at any time without warning, and the best we could hope for was that she would die of the common cold.

Karen and I discontinued hospice so that we and our amazing doctors, James Baugh and Sunil Kapoor, could get to work focusing on Bella's health, not her death.

Like so many moms of special kids, Karen is a warrior, caring for Bella night and day and, at times, fighting with health-care providers and our insurance company to get our daughter the care she needs.

Being the parent of a special child gives one exceptional insight into the negative perception of the disabled among many medical professionals, particularly when they see your child as having an intellectual disability. Sadly, we discovered that not only did we have to search for doctors who had experience with trisomy 18. We also had to search for those who saw Bella not as a fatal diagnosis, but as a wanted and loved daughter and sister, as well as a beautiful gift from God.

We knew from experience that Children's Hospital of Philadelphia was such a place. Fourteen years ago, we had another baby who was diagnosed as having no hope, but CHOP's Dr. Scott Adzick gave him a shot at life. In the end, we lost our son Gabriel, but we will always be grateful to Dr. Adzick for affirming the value of his life.

When Bella was 3 months old, she needed some minor but vital surgery. Some doctors told us that a child like Bella wouldn't survive surgery or, even worse, that surgery was "not recommended" because of her genetic condition - in other words, that her life wasn't worth saving. So we again turned to the Children's Hospital and found compassion, concern, and hope in Dr. Thane Blinman. He told us he had several trisomy 18 patients who did well - and so did Bella.

Next week, we will mark Bella's second birthday. Over these two years, we have endured two close brushes with death, lots of sleepless nights, more than a month in CHOP's intensive care unit, and the constant anxiety that the next day could be our little girl's last.

And yet we have also been inspired - by her fighting spirit, and by the miracle of seeing our little flower blossom into a loving, joyful child who is at the center of our family life.

Most children with trisomy 18 diagnosed in the womb are aborted. Most who survive birth are given hospice care until they die. In these cases, doctors advise parents that these disabled children will die young or be a burden to them and society. But couldn't the same be said of many healthy children?

All children are a gift that comes with no guarantees. While Bella's life may not be long, and though she requires our constant care, she is worth every tear.

Living with Bella has been a course in character and virtue. She makes us better. And it's not just our family; she enriches every life she touches. In the end, isn't that what every parent hopes for his or her child?

Our Family Christmas 2008

Photo by Martha Bravo

Definition of Trisomy 18

Edwards Syndrome : Edwards Syndrome (Trisomy 18) is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where “the more the merrier” is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". Just like with Down's Syndrome (Trisomy 21), there is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Unfortunately because there is more information encoded on the 18th chromosome, the severity of this condition is greater than that of Down's Syndrome. Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed.

But oh, how we love these special little babies. When Brianna was born we were told she would probably leave this earth within 24 hours...but look at her now. 24 months old, healthy, adorable and amazing. God has been so good. Brenda

Bri's Medical Condition

Brianna was full-term born on April 12, 2007, weighing 5 lb 18 oz and 18" long. Her Apgar scores at birth were 8 and 9. Approximately 15 hours after her birth we were advised of the tentative Trisomy 18 diagnosis.

Immediate health issues had to do with her heart: Mainly, a VSD (Ventricular Septal Defect); PDA (Patent Ductus Arteriosus) ; and a PFO.

Open Heart Surgery at 4 months and

G-tube placement before we came home.

Eye surgery in Spring of '08 to correct cross-eyes.

Tubes placed in ears in Fall of '08 hoping to quash the numerous ear infections.

Scan of abdominal section in Dec. '08. Everthing appears normal.

Brianna takes formula by g-tube but eats baby food by mouth. She can hear, see, is rolling over, sitting up, trying to crawl, playing with toys, says "da da"; "do it, do it, do it" and various other sounds. She is the happiest child we have ever known.